Delayed update

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You all I am sorry but we got back safe and sound easy peasy. Time is being experienced in strange ways for me these days with everyone home doing school and work, the days blending together with the unusual rhythm of the week.

So, Brian and I had noticed recently that Charlotte seemed to be bruising a lot lately. We seemed to find a new one everyday, although they are found in places where kids who are playing may get them like on her shins, elbows and forearms, knees and thighs. We know she’s been playing hard lately and has the energy of a typical a 6 year old but there is very little peace for Brian and I when it comes to Charlotte. We seem to look at her under a microscope and it’s just part of our reality I guess. So while I’m clinic Tuesday, I had some worries waiting for her labs to return and asking the team here their thoughts on her bruising of late. Swimming through my head are thoughts of “what if she has weakened capillaries from all the treatment? What if her platlets are low? They shouldn’t be low. What if it’s a sign of something wrong in her bone marrow.” I mean I walk around all the time with thoughts that just shouldn’t be, that just aren’t normal. But that’s because, to be honest, that’s what trauma does. Kids are so resilient while us parents take so much longer to heal. I’m not sure the worry will ever end and that’s the reality for any parent I suppose though ours is a bit more heightened. 

The GOOD NEWS is that the team is not concerned, her labs are great, and she looks and feels great! We walked a mile into clinic for her to receive Neuroblastoma vaccine shot 4 of 7. She’s sat next to me doing virtual kindergarten on her teachers google classroom while we waited during clinic, the shot this time more painful then previously without rhyme of reason, but I just prayed the medicine that started to coarse through her veins would elicit a strong immune response and help her body learn how to invisibly fight this cancer. She just keeps going, keeps moving forward. 

After her appointment we drove back home like the road warriors we are! She doesn’t need to return to NYC until August. Over the next month are scans, her port removal (YAY!), and God willing a week at the beach for a VACATION❤️🌈 We feel so blessed and thank God every single day amid it all. Finally some of our amazing village donated to The Band of Parents in honor of Charlotte in order to help other families trying to access housing in NYC while their child receives treatment for cancer amid all the shut downs during this pandemic. We are so grateful and honored. To be at all on the side of helping to give back to all the charitable giving we ourselves have received is a goal of ours...to help other families going through the unimaginable. We are so thankful to have a village still around us.
 #Charlottestrong

Walking to our appointment in NYC amid the COVID19 Pandemic

Please lord let this be the last time we have to use her port. Ever

Kindergarten time


Home❤️Water gun fight then backyard movie

On the lake on boat, R Happy Place, this past weekend and caught Chase and Charlotte snuggling. They sure love each other 

3 amigos enjoying lake time this past weekend❤️R Happy Place for sure. Chase even jumped in to swim and paddle. He even jumped off the boat and paddled over to a noodle to float on😆I’ll never forget how hard we all laughed at that. 

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